Monday, June 08, 2009

Stay the Course

I went to see the Lyme specialist today. After driving 90 minutes there (and later, 90 minutes back), his message was pretty simple. He said, "Well, I guess you should just stay the course for now."

You know how I like my data, so today I went in with my graphs and charts updated! I track how I feel each day with a simple scale of 1 to 5 (5 being very sick and 1 being well/almost "normal"). It showed pretty clearly how Lyme has affected me. Last year at this time, I had racked up several months of feeling quite well, averaging 2.1, after starting low-dose naltrexone in March 2008. Lyme plunged me down into the 3's, 4's, and 5's.

In February 2009, my symptoms had cleared and I went off the antibiotics (I was at about 2.2 in February, very close to my pre-Lyme condition). Then, as most of you know, my symptoms returned, I went back on antibiotics and went through another 2-month long herx, with way too many 4 and 5 days that confined me to the couch.

My graph clearly shows steady improvement now, but I'm not yet back to pre-Lyme levels. I haven't had much knee pain, but my overall fatigue and reduced stamina are still worse than before.

So, definitely making progress but not there yet. And, although I hate being on such high levels of antibiotics for so long, I'm going to be pretty hesitant to go off again, until I'm completely sure the Lyme is gone (no way to be really be sure, though). I just don't want to go through a fourth herx reaction from restarting again!

So, no big news. But I'll take slow, steady improvement. Just stay the course.

5 comments:

Sorry you are still struggling Sue with Lyme. It is a smart and tricky illness. I know that herxing is awful, but it does mean die-off is occuring. I often this we are the gunea pigs in finding what works to kill ~ really kill Lyme and its coinfections. The next generation will have better and faster treatment available I hope due to our journeys and the doctors who treat us as best they can.Gentle hugs this day, Sue..and better days ahead for you!!!!!!

I do, however, think this is part of the reason why I never encountered a doctor who told me it was all in my head during my first undiagnosed year. A few said they didn't know what was wrong, but none doubted there was something wrong when I went in with graphs showing how I went from normal and energetic, then plunging into severe illness in a single day.

Oh, well, it makes me feel better to have data! besides, it's good for tracking whether various treatments help.

Can I just say that I love the name of this post? It has been sitting on my sidebar for the last couple of days, and every time I see it, it is an inspiration, a little whisper of wisdom for me. I almost don't want you to post something new, because then I won't get to see it anymore! Of course, I love your posts, so that isn't completely true.

I'm curious about your charts -- what kind of forms (if any) do you use, and how do you chart your progress? I've been thinking for some time that I need to do that, especially when I start trying new supplements. I need to be able to tell if they are doing any good. I just haven't been able to bring what I want into focus and actually do it yet.

Ah, my charts...I just happen to be an over-analytical person with an engineering background, so data and graphs are in my blood!

A few weeks after I first got sick, when I realized this was no ordinary flu, I just began charting how I felt so I could show doctors something more quantitative.

It's pretty simple really. At the start of every month, I print our a blank calendar month for me and for each of my boys. Each evening, when I write a few lines in my journal, I also jot down any out-of-the ordinary symptoms in that day's box, plus a rating, from 1 to 5 of how I felt (or how the boys felt). I think my scale might be backward from what others do, but for me, 1 means great and 5 means badly crashed.

I also write another number in the upper corner to show the level of exertion for that day, again 1 to 5. For myself, I use a 10-point scale, with up to 5 points for exertion and up to 5 points for stress. Tracking this for awhile, it became clear to me that I do OK if I stay at 7 or below on my stress/exertion scale. More than 1 day at 8 or higher, and I will almost certainly crash. So, it's helped me figure out where my limits are.

At the beginning, I graphed every day's rating so I could see the daily patterns. It was helpful in figuring out the push-crash cycle (before I knew there was such a thing). Now, I only graph monthly averages for myself, but it still helps me to see patterns - for instance, it was very obvious when Lyme hit. Sometimes, especially for the boys, I graph % of time crashed (just count the number of 4's and 5's in the month and divide by the number of days). That helped me show Jamie's doctor when his stamina was decreasing and he needed a higher dose of Florinef.

So, now you know all my data-gathering secrets! I do think this helped me in that first year - not a single doctor ever suggested to me it was all in my head. Hope it helps. I would advise you to keep it simple.

I have had Chronic Fatigue Syndrome (CFS or CFIDS) since March 2002. My 19-year old and 16-year old sons also have CFS, and my older son also has Lyme disease plus two other tick infections. This blog is about how our family is learning to live with chronic illness, with a focus on living and enjoying our lives in spite of these challenges.